Trying to sort this all out

What are the immediate and long-term effects of living with this disease?

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trahob
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Trying to sort this all out

Post by trahob »

Hi, it's Traci here. I was diagnosed back in October with CC during my second colonoscopy in 5 years with polyps. Thanks to my brother for sending me in after he had polyps. I would not have considered since I was then only 45. Thankfully, I found a new dr who did several biopsies this last time to confirm the CC. A previous dr had left me with "take pepto, you've got IBS." I've suffered with D from time to time much of my life (yes, mostly during stressful periods). The past year and half has been pretty much ongoing, with some times worse than others. If I wasn't working in a family business during this time, I don't think I would have been able to work at all. (although that in itself certainly contributes much stress;) I had already gone GF for about 6 months before my onset of constant symptoms, mostly just to lose weight and get healthy. Things were going really well (I even stopped wearing panty liners!) and then all hell broke loose. Not coincidentally, I'm sure, after an unpleasant episode with my dad. Mornings are by far the worst. It's usually under control by 9 or 10 am. Before that, not straying far from the bathroom since I'm in and out for a couple hours. Hard for my 10 yr old daughter to understand why mom always has to go the bathroom. Like all of you, I always know where they are in public places and pray I can get there in time. Not always.

I took Budesonide for 2 months, better at first, then by the end not as good. The week after I went off was horrible, we're talking hemorrhoid-inducing. So my dr put me back on it in a slightly lower dose. Headaches and feeling down were my main complaints for side effects. I also had a friend who found relief from IBS with Citalapram, an anti-depressant. I had known about it but never mentioned to dr because who want to take an anti-depressant? By this time, I'm feeling really hopeless so I mention it. He thinks it's a great idea, hoping to calm the Vegas nerve that runs all down thru there and I don't care because I am feeling really depressed by now! Dr really thought I would have good results with Budesonide, and is still hopeful.

Dr (as all of you have said) told me that diet really didn't matter. I had food allergy testing done with a different dr, not GI (IgG Food Antibody Assessment- Serum) trying to find answers before the CC dx. They said I had the most non-reactive test they had ever seen. Only a few low and very lows with 1 moderate- corn gluten. I stopped putting half a banana (very low) in my morning shake and switched to Activia. As so often happens with me, when I try something new things often really improve for a short while so I think I've figured it out. Then back to D. I took 2 courses of Xifaxin over the summer, when I first started it was a miracle cure. When I finished it returned with a vengeance so tried another course. It never helped, maybe worse. I've been taking Metamucil at Dr's recommendation for a few years now. Constipation has also been ongoing issue. Metamucil along with calcium supplements really helped for a few years. When the D started, they said take more. If I don't take it, I get constipated which is no good either.

I started the Elimination Diet yesterday after finding this forum and reading about it. It makes sense to me. Without knowing about all this, when I went GF and low carb, I ate mostly salads, vegetables- many raw with protein like salmon, chicken, steak for the past 2 years. I cut back on salads recently but haven't been as careful with gluten after dr told me it didn't matter.

So I have a few questions I was wondering if any of you could help with?
I was also dx low thyroid and have been taking Armour Thyroid 60-90 for a couple years now. I understand there is a relationship with thyroid and colitis as autoimmunes. Has treating or not treating low thyroid been an issue good or bad for anyone else, specifically Armour? I think D can be a side effect.

What's the fiber solution? When I stop taking Metamucil, I become constipated. Before taking it, I would BM about 1-2 times per week which after experiencing regularity is ridiculous. I recently started on "It Works Regular" at the suggestion of a friend. Only a week now, trying 1-2 at night. Less sugar which is good, but not sure about Psyllum Husk or fiber supplements with this. Drs have told me that more bulk-forming fiber should help D along with Activia and probiotics. Obviously the Activia is no good with dairy, but what about probiotics? I've been taking them even tried the really expensive ones without much improvement. Current Dr doesn't think they help at all.

Has anyone tried Acupuncture for symptom relief?

I appreciate reading your posts. It's nice not to feel so alone and ashamed. This makes you just want to withdraw from life and has been such a confidence-drainer for me. I feel like a shadow of my former 'go conquer the world' self. I really need to put myself out there and find a new job which feels impossible both because of obvious impossibility of leaving the house early and being at an office. My last venture in that world a few years ago left me with some embarrassing moments. All of that creates more stress and it's a vicious cycle. Trying to manage my symptoms so I can live life is a real challenge for the past year and a half.

Thanks for "listening".
Traci
Diagnosed CC Oct 2015
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tex
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Post by tex »

Hi Traci,

Welcome to our Internet family. Your experiences are definitely typical for the members of this group. Some of us (including me) experience alternating C and D, just as you do when we are reacting.

To get to your questions, I've taken Armour for over 10 years now. Thyroid function definitely can complicate MC symptoms, and for that matter, various other hormonal imbalances (including HRT and contraceptive treatments) can trigger or perpetuate MC reactions. But to be honest, I wasn't aware of a connection between Armour and MC. If it has ever caused any problems for me, I've been unaware of them.

Your current doctor is correct about probiotics. For years we (the members of this discussion forum) have known that for most people who have MC, probiotics are not only not helpful when MC is active, but they can make symptoms worse in some cases. Even the GI doc associations have finally become aware of that and in December the American Gastroenterological Association Institute published new guidelines for the medical management of microscopic colitis. You can review the guidelines at the following link (scroll down the page to the last news item). You will note there that probiotics are specifically no longer officially recommended (they were, previously).

http://www.microscopiccolitisfoundation ... s-new.html

A few members here have found that acupuncture, properly done, can help to relieve some of the pain, stress, and other symptoms associated with MC. It's not likely to have much effect on the disease itself (the inflammation), but it can be helpful for relieving some of the many satellite issues associated with the disease, and that can certainly make one feel better.

Yes, this disease can definitely be isolating — it can inspire a feeling of loneliness and hopelessness. And typically, no one understands the disease unless they actually have it. That's why we consider ourselves a family here. We all understand what everyone else is dealing with. Like you, we tend to be overachievers and perfectionists, and the disease forces us to shift down a gear or 2 and re-evaluate our priorities. There's no cure for MC, but the symptoms can definitely be controlled.

Incidentally, the reason why antidepressants work (in some cases) is because virtually all antidepressants are powerful antihistamines. Many of us have histamine issues that can perpetuate our MC symptoms. Of course this all flies under the radar of most GI specialists.

Again, welcome aboard, and please feel free to ask anything.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Marcia K »

Hi, Traci. Welcome to our group. You've come to the right place for help and lots of information. I had one acupuncture session soon after my diagnosis. I found that she really didn't know much about LC but I loved it for how it made me feel. I didn't go back because she's almost an hour from where I live but at some point I would like to have more sessions for stress relief/relaxation.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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Post by trahob »

Thank you Tex and Marcia.

Unraveling all the interconnections here is so enlightening. I never really considered the hormonal connection before. I've been getting bioidentical hormone pellet injections 4x yr for about 2 years now. I had hysterectomy at 41 and by my late 40's the hot flashes had become debilitating so I couldn't even sleep. It's ironic that I've been struggling so much finding health with MC because at that time I really took my life back, completely changed the way I eat and lost 25 lbs, paid attention to blood levels and took supplements etc. I ate mostly salads, fresh veggies, salmon, berries. Loved all the fresh foods and did really well for a while. I'm guessing now that I probably wasn't digesting much of it.

Still wondering thoughts about taking fiber? (Metamucil, It Works Regular)

Thank you!
Traci
Diagnosed CC Oct 2015
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Post by tex »

Sorry, I seem to have failed to address the fiber issue in my first post. In general, fiber is contraindicated for MC because it (especially insoluble fiber) is so irritating to the mucosal lining of the intestines that it can perpetuate inflammation and prevent remission. It doesn't typically create inflammation (because it doesn't cause the immune system to produce antibodies against it), but it can definitely perpetuate existing inflammation by constantly irritating our gut. Are you aware of how fiber actually works to "promote regularity". You might be interested in the blog article by Dr. Michael Eades at the following link, if you haven't already read it.

A cautionary tale of mucus fore and aft

And you might find the results of the research summarized by the quote below, from the article at the following link, to be helpful.
Of interest is a 2006 study that looked at the relationship between constipation and water, fiber, and magnesium intake. The study was conducted in Japan with a whopping number of 3,835 subjects who were between the ages of 18 and 20. Constipation was not found to be associated with low fiber intake or low intake of water from fluids. Constipation was associated with low intake of magnesium and low intake of water from foods.
The red emphasis is mine.

Before You Take Magnesium for Constipation

Here's a link to that original research article:

Association between dietary fiber, water and magnesium intake and functional constipation among young Japanese women

All that notwithstanding, if you feel that the Metamucil is actually helping, you may find it beneficial to continue taking it. If I recall correctly it's about 70 % soluble fiber, and soluble fiber is not nearly as abrasive as insoluble fiber. But insoluble fiber is almost always a problem, so the 30 % insoluble fiber in Metamucil is a liability, not an asset. Even so, if you're going to take a fiber substitute, Metamucil is probably the best choice. Citrucel for example contains about 50 % synthetic fiber, and we (as MC patients) tend to not tolerate synthetic products very well (including artificial sweeteners) because our immune system views them as foreign invaders, and often launches an attack against them, causing additional problems. Benefiber contains wheat dextrim and Fibersure contains inulin, which has been suspected of causing small intestinal bacterial overgrowth despite advertising claims that it promotes the growth of "good" gut bacteria.

Fiber Supplement Chart

I hope that some of this is helpful.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Erica P-G »

Another fiber to consider is Acacia Soluble fiber by Heathers Tummy care http://www.helpforibs.com/shop/suplmts/acacia_sale.asp
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trahob
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Post by trahob »

Thanks Tex, all very interesting information. It's a lot to digest. (pun intended:)

Traci
Diagnosed CC Oct 2015
trahob
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Post by trahob »

A few more questions....

- Have you found a low fodmap diet helpful?
- So based on what you said about antidepressants being histamines, I assume it would not be safe to take an antihistamine (claritin) with an antidepressant like Citalapram.
- Fennel tea: good or bad?

Many Thanks,
Traci
Diagnosed CC Oct 2015
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Post by tex »

Some people feel that a modified FODMAP diet has been helpful. If you have reason to believe that histamine is a problem for you, you might find the information in the short articles at the following links to be helpful.

Here is some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

I believe that Citalapram is rated as a mild antihistamine, so it probably would be safe to take an antihistamine with it. There is some flexibility built into antihistamine dosing. Allergists regularly prescribe up to 4 times the normal labeled dose of OTC antihistamines for treating chronic urticaria, for example.

But please be aware that SSRIs are listed as a common cause of MC for many MC patients. If it is a trigger for your own MC, then you will not be able to attain remission from MC symptoms as long as you are taking an SSRI. Some patients even find that their MC symptoms resolve after they wean off the SSRI they were taking, and as long as they avoid SSRIs, their remission will remain in effect (without a need for diet changes or any other intervention).

I have no idea how fennel tea would affect your MC. Some of us can tolerate certain teas just fine, while others have to avoid them. Normally, the fewer supplements we use (and this applies to medications also), the faster we will recover from MC, because if we happen to be sensitive to any one of them, we may never be able to reach remission. Simpler is always better, especially during the recovery period.

You're very welcome, and I hope that some of this is helpful.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Gabes-Apg »

- Have you found a low fodmap diet helpful?

there is no 'set' diet plan that suits everybody. some people do well on a modified low fodmap eating plan, some people do a modified AutoImmune Paleo eating plan. ultimately it comes down to listen to your body, figure out the ingredients that settle best for you and stick with them.
If you are having histamine issues, be aware that external non food items can cause major inflammation, pollen, dust, chemicals, pollution, mold, etc and these items can make food reactions worse.


- Fennel tea: good or bad?
I dont recall anyone mentioning fennel tea. one thing we have learnt is that an ingredient that settles well for one person, can cause chaos for another.
the only way to know if something will work is to try it.
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This is how MC Affects My Life.

Post by Joise »

Hello All,
I am a newbie to this forum and I can't share any great words of wisdom or fixes for lowering the toilet paper budget in any household. I had D for years and thought it was just a part of me. The only way I was diagnosed was a promise I made to my brother that I would be tested for Celiac after he was diagnosed at the Cleveland Clinic. I disliked Doc's from my mid thirty's when fatigue, belly issues, menstrual changes and just not feeling well always turned into "take the 10 question depression test". I always failed the answer "do you have trouble getting out of bed in the morning". I was always sent away with a script for depression which I only tried a few times. I flushed a bottle of Prozac once because it was the only time something made me feel that my cup was not half full, my life was crap, and I felt it robbing me of a general happy personality. Meanwhile my Doc went on a two week ski trip funded by some pharmaceutical pals, which he told me on a return visit. I disliked Doc's, and I am still not overly fond of many, except one.
In the summer of 2013 I visited the local family practice to have blood work to rule out celiac and met a genuine human being that became a Doc. When he looked at my record and realized I hadn't been to a Doc's for years he said "you must be one healthy person". I laughed and said definitely not, but I dislike Doc's so much I would have to be half dead before I saw one. I explained the Cleveland Clinic said I should be tested for celiac because of my sibling. A series of questions followed with a check up. When he checked my belly and said "does that hurt" I said yes, always has.... that's just me. Blood work followed and he checked everything with my permission. It's just blood work, something the other Doc would never do to check vitamin levels and other routine things! A few days later his assistant called and apologized because the Doc thought the lab made an error; could I come for more blood work. I never knew I was IGA deficient and the Doc could not believe I wasn't there often for respiratory issues. Vick's Vapo Rub, E-mergency and Zinc were very good friends. No IGA, no conclusive Celiac determination without a scope. I saw the Gastro, had the scope and had a colonoscopy. I had something rare called Collagenous Colitis. Both Doc's admit not much is known about this in the world of Medicine. So here I am, still happy, my cup is still 1/2 full and yes I still fight fatigue when my bowels decide they want to have a blow out party. MC is like having a really bad renter you can't evict! I sometime use Imodium if I have to travel or have a big work day of meeting, but dislike the weird sensation of pressure. I've eaten the fiber tabs which seem to help, but again weird pressure. I do go to the Docs anytime I feel a respiratory begin and I could be a CIPRO junkie. CIPRO works Magic on my belly! I contacted ENTROLAB but not having IGA to measure will not work.
This week I have gone Gluten Free. Today I will be pitching a freezer full of great soups, stews and various other home made tasty lunches and dinners because I can't trust the spices, bullions, or any other ingredient I used to make them. I am buying a new toaster, cleaning the cabinets, etc. Gluten Free won't be easy, but neither is living your life around bathroom episodes. Wish me luck!
Jo Ann
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CC 2013
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If I had a quarter for every flush I would be worth Millions!
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Post by tex »

Hi Jo Ann,

Welcome to our Internet family. Yes it's true that the medical profession doesn't understand this disease nor how to treat it. That's why we formed this discussion and support forum over 10 years ago. We share our experiences here so that we can all learn from each other about what works and what doesn't. And we've learned a lot about the disease and how to control it over the years.

By changing your diet you are now on your way to recovery. It's not easy at first, but it gets easier with each passing week, and when you begin to see improvements in your health it will become easier to stay the course. And eventually your new lifestyle will become your new norm.

Actually CC is not rare — it's only rare in the minds of physicians who are unfamiliar with it. Together with lymphocytic colitis, MC is much more common than celiac disease.

Again, welcome aboard, and please feel free to ask anything. And the best of luck to you in your recovery journey. You're off to a great start.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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